AIBU in thinking that Mumsnet needs a Chronic Pain Board

[Ouchwtfthistime]

Because we need to talk about:

1. Denial

we each start our own chronic pain thread?! disappointing response.

Am nodding along to everyone's posts

How about we start threads titled
'chronic pain: things that work for you'
'Chronic pain: come and grumble here'
'Chronic pain: tips for an easier life'
Etc etc.

We could all search the word chronic, and make an effort to contribute to each thread so they take off, or we could paste the other threads into a 'master ' thread.

Calling a* @MNHQ

ANYONE THERE??

We are your people and we need you!!

I’m going to take a random guess that’s there’s some type of hidden conflict of interest somewhere in relation to other sites. (Ie “health” sites).

I may be way off the mark, and hope I don’t get banned as am only musing.

But have seen it before on another (totally unrelated topic/board) where a lot of regulars were asking for something simple and there was radio silence until someone pointed out a link to another site.

@doadeer that sounds awful, I'm so sorry. Have they talked to you about surgery?

I had to have 3 lots of emergency spinal surgery at the end of 2019. Had all 3 within 15 days of each other as my disc had herniated in to the Cauda Equina nerves and it kept reoccurring. I've gone from being active and able to not doing very much! If I'm in the house my pain can be managed with meds, but that is me sat on the couch all the time. I'm obviously up and moving every 20 mins as I can't get comfy but if I do washing/ironing/dishwasher even cooking I trigger everything pain wise.

I've been left with being unable to walk normally, or any distance. I get my walking stick on Friday from my physio. I can't feel the left side of my calf or foot. Foot feels like it's being crushed if I put pressure on it.

I've lost control of my bowel and my bladder had declined massively of the last couple of months which means I'm struggling to either go for a wee, or stop starting, and thinking I'm finished and I start again. I have to self cath as I retain some days.

I can't stand upright for more than 30 seconds - my back can't take the pain and I get significant back pain frequently.

It's not been fun, and I've had to spend time as an inpatient at a spinal injuries unit to learn how to cath and look after my bowel, but I try to be positive.

Sorry for the long post/rant. It's been quite cathartic getting it all out. I'm on the list for a spinal stimulator so I'm hoping that may help.

I really hope they do something soon for you.. 💐

doadeer 💐💐💐

sending sympathy. I'm also having a nightmare with massive prolapsed disc compressing sciatic nerve. Such a bad week I'm now seriously considering private surgery. Such pain is devastating.

christmyarse you poor thing, that sounds horrendous. Really hoping tge dpinal stimulator helps 💐💐💐

I'm just adding my voice to say I would love a chronic pain board. I've read everything and am laid in bed in tears just knowing there's people out there who get it. I'll post more tomorrow but wanted to say thanks for starting it and I'm sorry that so many people are facing similar issues.

@ChristMyArse I feel so awful for you, just sounds dreadful 💔

@ChristMyArse - I'm so, so sorry to hear about this: what an absolute hideous thing for you to be going through.

ALL -

to get in touch with MNHQ, I reported one of my own posts and asked them to view this thread and consider a Chronic Condition board. I've had a response that they will consider it, so maybe a few more posters could do the same?

Goodness knows what number we're on, but: medication side effects. My medication causes birth defects. Potentially incompatible with life if the baby had all of them, which is statistically not that unlikely. TBH we got lucky with DD that she was born healthy, as we didn't know about the risk. I can't take or use any contraception (I've reacted to everything, got pregnant despite a copper coil, & allergic to all known brands of condoms so far). I can't come off my medication, I've tried, my symptoms go from difficult but variable to continuously intolerable & I'm already at increased risk of a stroke every time I have a serious episode. Despite this, we are still waiting for the GP to agree for one of us to be sterilised. Ideally me, as giving DH a vasectomy won't protect me against the possibility of pregnancy from rape by a stranger. And if I died & he found someone else, I know DH would actually like a 2nd child. He (we) always wanted two but I can't.

@MNHQ if you build it they will come!

AnExcellentWalker That's so tough, you really would think they'd act quicker wouldn't you?

Hi All,

I've just realised I've had an email from MNHQ regarding this. Sadly this was their response:

Hi DunravenBadger, and thanks for the suggestion for a new Chronic pain section. We're doing a fair amount of work to reduce the number of areas on the Talk boards and we're not planning on launching new boards for a while. However, it's great to see that the Chronic pain request thread has turned into a support thread and seems to be working well.

So for now, could we suggest that you start a thread called,
Chronic illnesses & pain support thread and see how it goes?

There's already a model for this type of thread from the Mumsnetters who are doing the Cancer support series.
The Chronic illness and pain support thread could go in either General Health or perhaps in the Autoimmune area (where we might be able to pin it).

Let us know your thoughts - we think the support provided in a thread or threads is a good idea, and there's definitely a demand for it. We'd like to check the popularity and usefulness of support threads for now and return to the idea of a new section once we've seen how these go.

Kind regards,
Michael.
MNHQ

That sucks, as not everyone has the same issues and questions etc can easily get lost in the thread.

I remember when the preppers board got set up, before that they were using a random board that wasn't use often to show the need for it! Maybe an idea!

@Creioz

That sucks, as not everyone has the same issues and questions etc can easily get lost in the thread.

I remember when the preppers board got set up, before that they were using a random board that wasn't use often to show the need for it! Maybe an idea!

That might not be a bad idea

The business founders board is really quiet sadly, wish it was more active but could use that

That is very sad as yes we have things in common but not much use for finding information on specific things without searching 40 pages at a time. It’s going be same questions asked over and over.

Cancer is something you either win or lose sorry to be blunt. It’s not something you generally live with from birth or for multiple decades of your life.

Comparing support threads isn’t really the same. Goodness I’m depressed now.

That's disappointing. I wonder why the need to reduce the number of areas on the talk board? If it is set out in an organised way and in use what's the issue?
I agree @Akire A lot of the posts were people saying yes please but now if someone has something specific how can we all follow or make suggestions.
319 messages in under a week how does that compare with some existing boards?

Yes strange. I only click on Active or I’m
On mostly. Only if I need something do I go looking for topics on their own. So having lots of areas makes it easier to narrow down what you are looking for rather than one massive thread for everything for holidays and you only want camping in Uk say.

The thing that frustrates me the most is MN saying if I started a board on General Health and enough people were interested then they'd think about it. Lots of people did respond to that one and to this one here. But their response makes me feel like they had zero intention so why not just tell us that from the off?

Has anyone had nerve denervation in their facet joints?

I stayed off AIBU and your board request yesterday, @DunravenBadger, because the waiting was just stretching out before me and I didn't see it go anywhere with the pleas from others posting (lovely people) because there was no response from MNHQ.

Now I've read MNHQ's reply. How f**king awful!!! Why don't they just re section the boards that don't get used?! Clearly there's no need for those, as there is no traffic.

I couldn't understand why the Cancer Support Thread didn't already long ago "transform" into a board (they sure deserve it too!), as it would be a delight to just FIND keyword searches, instead of having to go through 20 pages on each thread, hoping you find something that actually helps.

I'm pissed off. What kind of crap DIY response this is, it's not rocket science is it?

Dear Mumsnet,

We're bloody knackered of trying to be heard so I'm asking for a reasonable adjustment. Yes, I know, you're not my employer, but please hear me out? Chronic pain comes hand in hand with fatigue, trailing through a support thread requires concentration and relies on memory - we've already told you that we're not so good at that. And whilst we all have similarities with regards to our conditions, we've all got different stuff going on and it gets lost when it's all on one thread, because we're knackered with shot memories. So we'd really appreciate a small little place, to call our own, where we don't have to work so hard to be able to participate on Mumsnet with people who understand the achievement that is putting the washing out although I'd be lying if I said I'd managed that

So what do you think? A reasonable adjustment which takes into account our difficulties and in return we guarantee more traffic and threads that won't need much modding.

Please?

God you can tell I'm desperate can't you.

Excuse my language but I'm seriously pissed off. It's so fcking degrading having to beg for help. Again! Like everything else with chronic pain, people can't just help, we have to fcking fight and beg when we are already drained & exhausted!

I totally agree @Navilana. Cancer support definitely deserves a board!

@Ouchwtfthistime good points about adjustments.

@doadeer I don't have experience of that but don't want your post to get lost amongst our rants. Hopefully someone else can help re nerve denervation.